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The Joys of Having a Small Bowel Follow Through

This morning, I woke up much earlier than usual so that I would be ready when my mom arrived at 7:30 am to drive me to an appointment down at Albany Memorial Hospital. The name of the wonderful procedure I had done is a small bowel follow through to check out my terminal ileum. The quick explanation of this test goes as follows: you drink some barium and wait for it to move through your digestive tract so the radiologist can take x-rays of your small intestine. But that barely scratches the surface of the experience.

Per the instructions I was given, I did not eat or drink anything after midnight last night. This was very difficult for me, because I usually keep a beverage on my nightstand at bedtime due to the dry mouth I suffer from. Then I got up at an ungodly hour so my mom could battle morning rush hour traffic to get me to the hospital for my 8:15 check-in at patient registration. The procedure was scheduled for 8:30.

Despite my choice of clothing – only fabric, no metal, buttons, or other fasteners – I had to strip down to my underwear, socks, and shoes. I was given two hospital gowns. The first was meant to open in the back, while the second was to wear as a robe to provide some decency. Please take note of how fashionable I was in these gowns.

Double Hospital Gown

I got called in right around 8:30 so a technician could take my preliminary x-ray, lying on my back on the x-ray table. I was then asked to sit up and drink a cup of barium. “It’s unflavored,” I was warned. I opted to use a straw and joked that the reason they don’t let you eat or drink first is so you’re so thirsty you’ll drink anything. I was praised for looking on the bright side. Then I choked down a cup of the vile fluid and was told to lie down on the table again, this time on my stomach. This was my “zero minute” x-ray. Or maybe she said “minute zero.” It was one or the other.

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This is one of the documents my dad left on his computer. The images were added by me to illustrate the text.

The Parable of the Virgins 2

My initial spiritually inspired thoughts and scriptural references to support them

I believe some misconception may be due to a misunderstanding of the word “chasten”

From: http://www.merriam-webster.com/dictionary/chasten
chas·ten transitive verb
: to cause (someone) to feel sad or embarrassed about something that has happened

I believe that too many believe it to mean punish or correct! Is this the interpretation from the Greek?? Even if this is so, God has shown me that this isn’t necessarily His meaning as the reason for permitting every tribulation. We all suffer tribulations unless we are NOT sons, but bastards! His reason is to spur us to seek Him; to provide opportunities to grow stronger in and closer to Him. Without tribulations in our lives many, maybe even most of us wouldn’t even think about seeking God. We would probably only enjoy life and not think about God or others at all. Tribulations give us cause to seek God, and give us the opportunity to grow stronger and closer to Him.

Tribulation misconceptions

There are many Christians, some very strong in some areas of faith, that seem to make judgement about the faith of others due to a lack of wisdom or faith or something else because of lack of complete understanding. They seem to believe that their knowledge, their faith, their understanding must be better. They seem to believe that they have a right to judge those others. After all, this particular tribulation hasn’t been set against them!

Why do I believe these to be in error, to be misconceptions?

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God and Mantle Cell Lymphoma

This is one of the documents my dad left on his computer.

100607 019

chas·ten transitive verb \?ch?-s?n\
: to cause (someone) to feel sad or embarrassed about something that has happened

When I was young, I wasn’t sure about whether I should believe in God. I had gone to Sunday School, but wasn’t sure about confirmation. I wasn’t going to take the classes, but I did. At the end of the classes, I demonstrated a knowledge, and had a desire to believe, but I still wasn’t sure. God allowed me to be confirmed.

Over the years, God provided a number of people, events and situations in my life to guide the development of my faith. Elsewhere?

Miracles to help reinforce my faith. Elsewhere?

Throughout much of my adult life, I trusted God for all of my health, safety and well-being. I rarely went to the doctor. The only time I went to hospitals was to visit others, or for physicals for the fire company to prove suitability for active service. Those, and a hernia repair, were my only personal use of my health benefits. Birth of our children and wellness care for them…

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Dad had kept track of all of his treatment regimens in hopes of helping other Mantle Cell Lymphoma (MCL) patients understand their treatment options. I copy/pasted his documentation faithfully, although adding emphasis and links where appropriate and fixing the formatting. Anything in [brackets] was added by me for potential clarification.

Chemo Regimens for my Mantle Cell Lymphoma

* * * * * * * * * * * * * * * * * * * * *

Pre-Oncology

Week #1 – The following as accurate as possible. Doing it from memory. Look for paperwork for supporting evidence?

09/24/10 – At ~7:25 PM at end of lunch, had something sticking in my throat, feeling like it might choke me. Lasted a couple of minutes. Told Scott in case it happened again and I needed paramedics. Didn’t. Told Debbie about the incident when I got home.

09/25/10 – At ~6:30 AM, it happened again while in bed. Debbie took me to Medicall Urgent Care. Doctor Hermann H.? saw me about 7:00 AM, and had nurse make a 9:00AM appointment for me with Dr. DeVito at Stuyvesant Plaza in Albany that very morning. He told us I had a large [tumor] ? on my right tonsil which needed to be removed. He had surgical time for October 5. 2010 at Samaritan Hospital in Troy ~8:30AM(?). We took it. The operation was only supposed to take about 30 minutes, but ended up taking much longer.

10/05/10 – The operation was only supposed to take about 30 minutes, but ended up taking much longer.

10/??/10 – Follow-up with Dr. Michael DeVito. He told us that I was typed by the Mayo Clinic with Mantle Cell Lymphoma. He offered to have his staff contact an oncologist for us. Suggested NYOH in Latham, but I asked about the Rexford office. They suggested Dr. John DelMonte. We asked them to schedule a consultation for us.

10/??/10 – Initial consultation. Scheduled a CT scan?, PET scan?, echocardiogram? and colonoscopy?

11/15/10 – ?

Nodular Mantle Cell Lymphoma - by Gabriel Caponetti


Regimen #1RCHOP – NYOH Rexford except for the last, which was done at NYOH AMC prior to Regimen #2

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My #SoleStory – Cute Vionic Orthopedic Sandals

Vionic offered me the opportunity to review a pair of their Havana Heel Strap Slides for their #SoleStory campaign. I was thrilled, having already enjoyed the Orthaheel slippers they had sent me to review. I’ve never had a really good pair of sandals before. I’ve worn cheap sandals that looked cute but killed my feet, and I’ve lately been wearing a pair of Dr. Scholl’s sandals that were comfortable but not much to look at. But take a look at these:

SoleStory

For the first time ever, I have cute sandals that actually feel good on my feet. And I really had to put these to the test. I wore my Vionic sandals to the pool. I wore my sandals to the movies. I wore my sandals to the cemetery on Memorial Day so I could photograph the “new section” and document each person laid to rest there for an online memorial site.

I wore my sandals to the hospital to visit my dad after he was taken there by ambulance just a few days after his 63rd birthday. I wore my sandals to the hospital the last time he was able to speak, when he was able to tell me that he loved me. I wore my sandals to the hospital the next night when we brought my son to say goodbye to his grandpa, who wasn’t expected to live through the weekend. I don’t think I wore my sandals a few hours later, though, when the nurse called at 3:00 am and said it was time… and we didn’t make it before he passed.

I wore my sandals to his wake last Tuesday. Standing at the funeral home to accept condolences from people for three hours, my legs were tired and sore by the end of it, but I credit my sandals for protecting my feet and my ankles from additional pain. Standing for any length of time has been very difficult for me for a long time now, but orthopedic footwear has been a godsend. I also wore my sandals to Dad’s funeral last Wednesday, and though it may seem like a small thing, I was later complimented for my composure and my confident posture when I read the eulogy I’d written for him. I’d been terrified of falling apart in front of everyone, but I think I made my dad proud.

Thank you, Vionic, for providing me with these sandals for this review. I wish I had a happier story to share about them, but since I don’t, I am grateful that I was spared one type of physical type when I was in so much pain otherwise.

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Unfinished Letter from My Dad

I have always said that you were my first miraculous answer to prayer. That is not necessarily completely accurate. More precisely, you are my first “recognized” miraculous answer to prayer; and that answer hasn’t totally been completed, but parts of it are still a work in progress. While a few parts haven’t been fulfilled in in way which, on the surface at least, appear to be true, that may only be MY perception. The parts that haven’t seemed to have been fulfilled, may have been, but aren’t necessarily easy for me to know or perceive for certain. Still other parts must be of faith that I will not even have a chance of knowing until both of our earthly journeys have come to and end! But for those for which I am not sure have been fulfilled as I prayed within the first few hours of YOUR journey, I will always have faith that God will answer them as prayed that day. To me, the answers that I have witnessed until now are evidence, no proof, of that. Tribulations must come. These are opportunities for our edification, or sometimes for the edification of others; not necessarily to punish or correct us!

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Eulogy for a Good Man, My Dad

The Jerome Family

My dad was one of the best men I’ve ever known. It’s hard to find people who are truly good, decent, hard-working, kind-hearted, and humble – but Dad was all of these things. I don’t think there are many people whose faith in God are as strong and as pure as Dad’s was. I don’t think the Pope has as much faith as Dad had.

Dad didn’t know how to make a long story short. He had a tendency to make a short story long…one of his more charming quirks that he managed to pass on to me, along with his “interesting” sense of humor. So please bear with me.

I didn’t have the typical “daddy’s little girl” relationship with my dad, but he did usually take my side in a fight while my mom would back Joe. (Even though I’m pretty sure I started it most of the time.)

Dad wanted great things for all of us, and he worked hard so he could provide for us, working nights and giving up sleep on the weekends so he could spend time with us. I don’t know how he did it for all of those years, but he did, and we’re all grateful for it.

It’s funny, the things you remember when you try to look back through the years. I remember my dad giving the children’s sermon here on Sunday, using his Donald Duck voice. I remember working with him on the electronics kit he bought me from Radio Shack when I was little, even though I never quite got a handle on it. I remember him trying to help me with my physics homework in high school, another thing I had a hard time getting a handle on. And I remember how proud he was of me when I took first place in a math competition held at another school.

Dad never smoked, never drank, and when it came to gambling, he could spend hours at the penny slots on the same $10 to pass the time just so my mom could have fun playing the other machines. His only real vice was going out to eat. That’s how we knew when he was really sick, when he stopped going out to lunch all the time.

Dad came to terms with his death long before the rest of us did. He had accepted the possibility back when he was first diagnosed with cancer almost four years ago. He tried to talk the rest of us into accepting it, too. I didn’t want to even think about it, and I don’t think anyone else did, either. A week and a half ago, I still didn’t want to think about it. I still had hope that there would be some miracle, that he would get better. This was Dad we’re talking about, and he’d fought so hard and overcome so much already. Of course he would get better.

But he was just too tired. His body was too broken. There’s only so much one man can take. And when I saw him there in the hospital, so weak, in so much pain, I understood. As much as I didn’t want to lose him, it was worse to think of him suffering that way. One day he was talking in a whisper – I told him I loved him, and he told me he loved me – and the next day, he couldn’t speak, couldn’t relax, could barely open his eyes. And then I just wanted him to find peace. A few hours later, he did. He went home.

The world lost a good man. I lost a good dad. I’ll never hear him cracking his bad jokes at the dinner table again. I’ll never nod and smile as he tries to sway me to his political views that were the polar opposite of mine. I’ll never get to ask him all of those questions that I was waiting to ask him when he got better.

I love you, Dad, and I miss you so much.

Joe Jerome passed away early Saturday morning, June 7, 2014 after a long, hard battle with mantle cell lymphoma. He was many things to many people, but to me, he was my father. For everyone who couldn’t make it to his funeral service this morning, this is what I wrote to honor him.

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Domain Name Estate Sale – June 2014

Domain Name Estate Sale

My dad lost his long-fought battle against Mantle Cell Lymphoma (MCL) yesterday – June 7, 2014. He was a bit of a domain name collector, so we have some digital assets to take care of. After sorting through which ones we wanted to hang onto, we came up with this list of domains for sale:

  • oan.info
  • oanb.org/net
  • oanbd.org/net/info/com
  • 62623.com
  • OpenAllNightBusinessDirectory.com
  • OpenAllNightBiz.net/com
  • OpenAllNight.info
  • BusinessesOpenAllNight.net/com
  • BizOpenAllNight.net/com
  • open24hrs.biz
  • 24hrbiz.info
  • CapitalAreaDining.com
  • EnRouteBiz.info/com
  • crddays.net
  • amityweb.net/org/com
  • home-network-lab.org

We are offering these domains on a “best offer” basis, and we would prefer to bundle the various TLDs as listed above. (i.e. We’d much rather have oanb.org and oanb.net go to the same person instead of as two separate sales.) We do have minimum amounts we will accept for the more valuable domains, and we are aware of the special valuation of domain age, etc. There are a few we will be renewing if we don’t receive acceptable bids within the next few days.

If you would like to make an offer on any of these domains, please email me at twilightsun at gmail dot com with the subject line “DOMAIN NAME ESTATE SALE.” I will mark off domain names as they sell.

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Grief

My dad will be going into hospice care once he is discharged from the hospital. He has fought a long, hard battle against Mantle Cell Lymphoma (MCL) – and now he’s ready to stop fighting it.

The first time he was diagnosed with cancer, he hardly seemed sick at all. His treatment worked, and his autologous stem cell transplant sent him into remission. When the cancer came back

Relay For Life 2012

Relay For Life 2012

He’s been in so much pain for so long. Treatment after treatment has failed. His E. coli infection almost killed him in the fall. His ruptured appendix almost killed him just a few weeks ago. They took a liter of fluid out of his lungs yesterday and his kidneys are failing. His body has taken too many hits. He’s sick, he’s weak, and he’s suffered some terrible indignities. He is at peace with his decision to forgo his chemo and focus only on his comfort now. It is for the rest of us to come to terms with it now.

I am not doing well. I knew the odds have been stacked against him for a long time, but I kept waiting for the miracle that would give me my dad back, when he would feel well enough to sit at the table for Sunday dinner and tell terrible his jokes. But I’m never going to get him back.

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In Honor of My Dad on His Birthday

My dad is 63 years old today. We’re so grateful he’s still here to celebrate this birthday with us, but I wish it could be better for him.

Dad and Mom

(The above picture of my parents was taken at my wedding in 2000. It can’t be removed from the album page to scan in, so I had to take a picture of the picture, which makes it rather poor quality.)

Dad has been battling with a recurrence of his Mantle Cell Lymphoma since last summer. That autologous stem cell transplant he had in 2010 didn’t end up being the “cure” we’d hoped for. Unfortunately, the new chemo regimen also didn’t work this time around. Or the one they tried after that. So he’s been suffering terribly from the cancer pain and the side effects of his radiation treatments and the Big Guns of recently-approved chemo he’s on now. Well, he will be on again soon; he had to stop taking for a while. On top of everything else, his appendix ruptured, and he had to have surgery. The chemo would have prevented him from healing internally, so despite the fact that the surgeon said the cancer was everywhere in his abdomen, the cancer has been allowed to continue growing as we wait for him to heal enough from the surgery.

And it’s so unfair that he has to suffer any of this. He’s worked hard his whole life, starting at GE as an apprentice toolmaker after high school and sticking with them (except for an unfortunate Lack of Work period when I was 9) all the way through his retirement three years ago. He has never smoked or drank. He worked the third shift (overnights) for pretty much my entire childhood in order to provide for us. And I think his faith in God is stronger than that of most ministers and priests. Maybe even the Pope.

Damn cancer.

Dad is very discouraged. He’s had so many setbacks. He didn’t have this pain the first time around, and now it’s the only thing that’s constant.

For his birthday, I wish I could give him even an hour of relief from his suffering. But that just is not within my power. I do wish, hope, and pray for it, though.

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